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Things are looking up (for now!)

For those (poor souls) that read this blog often, you will know that I am not the most overly optimistic person in the world. So you may well realise that this is a big statement for me to make. Those that are new (hello!), it has been a rough ride so I am a realist. I’m not pessimistic, but not overly optimistic either…

So… what brought about this new feeling of relaxed parent of a child with PDA?

It starts with no school for the next 2 weeks, moves onto the fact we might actually get some support, AND a NON- Muppet! It is just too much to take in over the last 48 hours.

The matter of home schooling Dinky has come up before, and while I get that she will be more relaxed (like she is now hence the tinge of optimism- as she is serving her fixed term exclusion), I also know that PDA doesn’t go away when school does. The 6 weeks summer holidays for instance, were not all sweetness and light, but neither were they doom and gloom… they were different.

Dinky has been different these past 2 days. When the school pictures come off the visual timetable, it is almost instant relief for her as her biggest anxiety goes. The problem is her sensory and more autistic side come out more when the pressure is off. She gets caught up in repetitive play and needs almost constant supervision when she is trying to get sensory feedback.

Yesterday was a good day for both of us, it just didn’t seem like it while it was happening. I have been really stressed with the school and everything that has been going on and I decided to phone all the relevant people and let them know about the exclusion, but couldn’t do that with Dinky around. My dad, bless him, is in a ‘she does have PDA’ mindset, (so I am making the most of it while it lasts!) had the day off so that I could go to the local autism group meeting last night, and I asked him to take Dinky to soft play, that way he wasn’t really ‘looking after her’ and she was basing herself about and getting rid of some of that excess energy. So he did.

But the morning started with

“Mum- pad wont charge!” head butt, head butt, head butt. Nice! I was just getting myself up when I hear lots of banging and crashing coming from the living room. I throw my jumper over my head and run out. Dinky looks like a deer caught in headlights! She had my phone and a paper towel.

I asked her what happened (much, much more calmly than I thought was actually possible given the anger welling up inside me!), she couldn’t have her pad, so she had taken my phone, and dropped it in her milk! I very quietly told her to go upstairs while I sorted my phone. Dinky did as she was asked. I think she knew that she had done something very wrong. She is not supposed to play with my phone. she has her own iPad and toys.

I then got a call from the deputy at the school, I picked up but couldn’t hear her. So I hung up, she phoned again and I hit the speaker button and could hear. I looked at the display on my phone and it was showing that I had my head phones in… which I didn’t. So at the very least Dinky needed a new charger wire (hopefully that was the cause) and I would have to talk to everyone on speaker, unless I paid the excess on the mobile phone insurance. Which normally wouldn’t be a problem, however Dinky’s party is on the 16th and I still have to pay the balance, and I have just spent lots of money on birthday presents, oh yes, plus half term is just around the corner and she is excluded for the week leading up to the half term holidays!

The deputy tells me that the poor nurture leader has a bruised coccyx and kidney inflammation. She gives me a run down of the things the children are doing and what Dinky would be attempting (this is why she is no longer Muppet jr). She said that she wasn’t expecting us to do it all, but anything I can do with her is a bonus if she is happy enough to engage with learning. Before we were handed masses of work and told it had to be in by the morning she came back. This was much more realistic and PDA friendly. She really seems to have taken PDA on board, but did take it a step to far asking how I was feeling! At that point I had to say that things could be much better, but I shall go with the flow.

It was not a good morning. Stressed to the limit, my poor dad turns up. I tell him to just take Dinky out as I need to work out how much she has cost my bank balance in the last 2 hours! I gave him the money to take her out and the buss passes and they went.

I emailed the lead professional, and the SN group leader and told them what had happened.

I then thought about the social worker. She said that she would try and get some support. Well, I was extremely stressed and Dinky would be at home for 2 and a half weeks and technically wasn’t allowed out in public during her exclusion. I phoned but she was out and was going to call me back.

I got on, and tried to call the SEN team. I was so angry that I didn’t want Dinky going back to that school as they obviously cant meet her needs. Our SEN caseworker isn’t in until Monday. SO I spoke to another, equally unhelpful, member of our LEA SEN team.

(I promise the day does actually get better!)

She said that there is nothing she can do, they are waiting on health reports so cant speed up the process anymore than it is at, at the moment. She also said that I would be in trouble with the education welfare people if I just didn’t send her to school and it wouldn’t speed anything up. There was no other provision for her before the statement could be drafted IF she gets a statement, as that still hasn’t been decided.

Basically she was useless.

I then emailed the social communication team person who sits on the panel, explaining that Dinky had only been in school for 4 days in the past 2 weeks and would not be in for the review on the 10th. The school haven’t actually implemented any of her strategies as of yet, so I don’t quite know what feedback she will get from that session.

(well unless the school full out lie, which is definitely possible if The Muppet is included in the meeting!)

I wasn’t content but it would have to do.

I then got a call back off the social worker. Now, I have a very big distrust of social workers, I also still don’t know why she is involved as she is not part of the child disability team, and she is not part of the child protection team. She is from children’s services. As far as I can fathom, Dinky has been escalated to level 4 on the continuum of need which puts her in the higher support bracket and opens up lots of avenues. So I was only seeing if she could help and if she couldn’t I was going to ask her out right why she is involved in my little family.

However, she was lovely. I genuinely mean that. She said that the 4 hours she is out with the special needs group the day after her birthday is not enough. She said she was going into a meeting with her manager and she would bring this up and get back to me. She asked why it sounded echoy on the phone, so I told her about my mobile and the milk, and about the fact that I basically told my dad to take her out as I may have just screamed the place down, but as he left I cried. She said to stop phoning and emailing and just to chill out before they got back.

Dinky got home and I had missed her, and felt so guilty for basically telling my dad to get her out of the house. It was only because I was so stressed out. Dinky took my dad upstairs to play ninjago. Now even he knows all the characters off by heart and could probably recite the first short film!

I told her I was going to pop to the shops to get her a new charger wire for her Pad, and she was happy to let me go.

We had a relaxing day and she went to up to bed quite well, although was watching her iPad .

I was playing FIFA 14 with my dad, and my phone rang, it was 6.30pm, but it was the social worker. She sounded busy with small children around her. It wasn’t until toward the end of the call she said she had gone home but wanted to let me know the outcome!

Basically there is a team from level 4 called the resource team, they are going to come out at some point.

She asked me what type of respite I was looking for, day or night… I said day. She wondered if we could work up to night, or see if that was an option!

She is going to ask the higher manager if they will clear some sessional work for Dinky 3 hours a week for the next 4 weeks, and go from there. She also said, when discussing Dinky with the line manager, he said that Dinky was right up the street of their own psychologist/psychotherapist, so they were going to refer her. Apparently there was a bit of a wait…

7-10 days!

I told her she obviously had never tried to get a 5 year old seen by a psy-anything before! I have been trying for 2 years! I’m sure we could wait a week to 10 days! She said the lady was great and could recommend like a year play therapy or what ever and they would fund it.

I was starting to see a distant light at the end of the tunnel.

She asked if there was anything I would like to do… I said rest. All I need is rest. Dinky is full on… (although right now she is calm in her room with her ninjago toys and Netflix!), and it would be nice if I could get some rest as she is constantly being excluded and if she is out with someone who is trained to take kids like Dinky out for a bit, I might actually have a chance at that relaxation I hear so much about!

My dad was astounded as was I when I relayed all the information to him.

I went to the autism meeting and the Sn group leader was there, I told her and she said it was about time someone helped! She also said the ed psych report was amazing and cant wait for the TAC which is next week!

Today…

Today was the OT appointment.

The problem with being in a group is the mixed reactions people have with different professionals. Some like the Muppet paediatrician that said that Dinky had ADHD and would ‘look into PDA’, I don’t. Some liked the OT, some didn’t. Our kids are all different and have different levels of need so I suppose it all rests on what they wanted the outcome to be.

I had not even prepared myself for this appointment, so I had no idea what I wanted the outcome to be.

We went, dinky had her pad on the way there, was watching the fish before we went in, then she played while I talked to the OT. after a few minutes Dinky tried to escape, she said she didn’t want the door shut. It took some doing but I calmed her down, and distracted her with marshmallow flumps!

The OT said that from the reports from the school, the paediatrician and myself that Dinky seems to have problems with processing the sensory information she was given, so she was seeking it.

We went through all the sensory systems and issues she has within those systems.

Vestibular and proprioception she needed to seek in order to feel ‘alive’ as it were.

I have handouts on tips for hair brushing, cutting hair, and sensory diet activities.

She said SOME of Dinky’s behaviour could be sensory related, and by using the sensory diet activities COULD relive SOME of the challenging behaviour. She said that obviously the PDA would account for the rest, but if she was feeling more secure in her sensory world, it might just lower her anxiety so that she can participate in learning. We shall see.

She is going to send someone into the school to ask that they put in a sensory box, allow her to use her chewigem, and to let her have frequent breaks in order to run or spin as necessary.

The only thing that annoyed me was that she didn’t actually speak to Dinky, or find out what her current academic levels are, yet said that she didn’t feel the special needs school I looked at would meet her needs, we had only been in there for 25 minutes. I said that was not what I was told by the Head of that school. He was very confident he could meet her needs. Plus the educational psychologist said I should look there.

I don’t see why people have a view of what school she should go to. If she isn’t coping in mainstream a generic special school has to be the next step. She did mention EBD unit. But I wont because I know Dinky will copy behaviours, which I believe has contributed to the 8 exclusions in 8 weeks of being in nurture. A sort of EBD unit. Unless I could guarantee that they could and would use PDA strategies, it is not happening. The special school have already said that they can meet her needs and know what PDA is and would use the strategies.

The social worker isn’t in today, so I should hear back on Monday what they are going to do. She said she may email me as she will be checking her emails from work today.

So yes, things are looking up…

Although I may have tempted fate as now Dinky’s family have decided she exists again as her birthday approaches. I’m sure they will forget as soon as something more interesting enters their lives. I have had a few messages while writing this!

I had better go make a shop to teach Dinky about coins. Using real coins… This might be a very bad idea, but seems better than the sheets the school would have sent out!

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2 thoughts on “Things are looking up (for now!)”

Try and be adamant about EBD school. Teaching at Dillon’s unit said to ed psych this week that he actually distances himself from the kids with behaviour issues especially when they kick off and that he’d be terrified in an EBD school . After all their behaviour is a symptom and if the appropriate support is out in the behaviour gets better. Good luck with the coins!!!x

Hey,
Thanks.
The ed psych said x special school, the x special school head said he could meet all her needs including academic. She is in nurture (mini ebd) 8 exclusions in 8 weeks since starting there… the facts speak for themselves… the OT had only just met us.

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Thoughts on the crossroads of law, politics and society - for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….